My history: Diagnosed at age 19 (in 1986) with Crohn's disease. Doctor wanted me to take prednisone at that time; as a teenager, I was more concerned about the effects of the drug on my looks, rather than how it could help me, that I chose not to take it and didn't return to see the doctor. Some how got through that crisis and went on for a few years without many problems.
Then in Nov. 1992, I married my wonderful husband. A month later (day after Christmas, 1992) I went into the emergency room with SEVERE abdominal pain. I knew it was my Crohn's, but the ER doctor wanted to run an ultrasound to see if it was an eptopic(sp?) pregnancy....well, I was pregnant all right (honeymoon baby!), but the pregnancy was normal. The Dr. said he had to do exploratory surgery on me, which entailed a vertical scar from bottom of rib cage and down below bikini line...lovely. They found my intestines had tore open, and removed a total of 21 inches (some small, some large) and the appendix. After the surgery (no colostomy required), I was given no prescription (which seems odd to me now that I think about it). So as my stomach muscles and scar were trying to heal, I was growing a baby too!. 9 months later, I delivered a healthy girl on 8/15/93 via c-section (vertical incision along 9-month old previous incision). She is our miracle baby (and our Jamaican souvenir!) as I was told she maybe wouldn't survive the surgery...but she did.
Two years later almost to the date (8/14/93) I delivered another girl (no c-section required! yeah!). I had to be induced to deliver her 2 weeks early as I started experiencing a Crohn's flare at the end of my 8th month and was put on a low dosage of Prednisone...doctor did not want baby exposed to a full month of prednisone so we decided on the induction 2 weeks early. Then I went from August 1993 all the way to May 2002 without any serious flares and never took any medications of any sort for the Crohn's (and also had another child via another vertical c-section (a boy) in November of 2000).
In May of 2002, went on Pentasa (4 pills 4 times a day at 250mg each). I was not diligent in taking it however, nor visiting my doctor, and soon just stopped taking it altogether.
In Nov. 2003, I lost my 16-year old stepdaughter in a terrible auto accident. The sadness and stress this brought to our family of course, affected my Crohn's and I returned to the doctor to be scolded that I wasn't taking care of myself. Since then, I had been taking prednisone regularly.
However, in February 2008, I returned to ER with severe pain in my back that came around to the front. Many tests done on me! ER doc came back to report I had lesions on my liver, a large mass on one ovary, a bowel blockage in the area of the gallbladder, and the ugliest gallbladder packed in fluid with several stones that he'd ever seen! Via yet a 4th vertical incision, ovary and mass removed (no cancer), lesions on liver were nothing - described as blobs of blood vessels that I was probably born with (I have one in my spine as well), gallbladder removed, obstruction repaired.
After that surgery, I returned to a diligent use of Pentasa. I was never the same after that surgery though...cannot tolerate fatty foods and had such bad distention in my stomach area that I looked 4 months pregnant (I am 5'9, 128 pounds so the distention was very apparent on my thin frame).
Then this past June 2009, the distention and gas became so terrible, that I returned to my doctor. A regular CT scan showed large amounts of air in body cavities that shouldn't have air - this meant I had a small perforation somewhere in my intestines! I was put on Cipro and some other antibiotic to guard against infection, and was also put on a liquid diet for a week. During this same week, a CT enteroclysis was ordered...not a fun procedure but determined for my doctor as to whether I had strictures or inflammation causing some of my symptoms...thank goodness it turned out to be inflammation, because strictures would have meant surgery. The CT enteroclysis also revealed that the perforation had healed itself in just one week (amazing!). In a consultation with my doctor after these tests, he wanted me to take Prednisone - HOWEVER, I had done some online research about alternatives to Prednisone, and asked him about Entocort - he said sure and that is what I am taking currently.
Let me say that I have never felt so good as I do right now - I realize now that I was having all kinds of small flare-ups and such throughout the years. I swear by the Entocort and pray every day that it continues to work for me. Entocort, while still a steroid, is only aborbed by the intestine so I have no systemic reactions to it.....So that's my history and my current status.
Then in Nov. 1992, I married my wonderful husband. A month later (day after Christmas, 1992) I went into the emergency room with SEVERE abdominal pain. I knew it was my Crohn's, but the ER doctor wanted to run an ultrasound to see if it was an eptopic(sp?) pregnancy....well, I was pregnant all right (honeymoon baby!), but the pregnancy was normal. The Dr. said he had to do exploratory surgery on me, which entailed a vertical scar from bottom of rib cage and down below bikini line...lovely. They found my intestines had tore open, and removed a total of 21 inches (some small, some large) and the appendix. After the surgery (no colostomy required), I was given no prescription (which seems odd to me now that I think about it). So as my stomach muscles and scar were trying to heal, I was growing a baby too!. 9 months later, I delivered a healthy girl on 8/15/93 via c-section (vertical incision along 9-month old previous incision). She is our miracle baby (and our Jamaican souvenir!) as I was told she maybe wouldn't survive the surgery...but she did.
Two years later almost to the date (8/14/93) I delivered another girl (no c-section required! yeah!). I had to be induced to deliver her 2 weeks early as I started experiencing a Crohn's flare at the end of my 8th month and was put on a low dosage of Prednisone...doctor did not want baby exposed to a full month of prednisone so we decided on the induction 2 weeks early. Then I went from August 1993 all the way to May 2002 without any serious flares and never took any medications of any sort for the Crohn's (and also had another child via another vertical c-section (a boy) in November of 2000).
In May of 2002, went on Pentasa (4 pills 4 times a day at 250mg each). I was not diligent in taking it however, nor visiting my doctor, and soon just stopped taking it altogether.
In Nov. 2003, I lost my 16-year old stepdaughter in a terrible auto accident. The sadness and stress this brought to our family of course, affected my Crohn's and I returned to the doctor to be scolded that I wasn't taking care of myself. Since then, I had been taking prednisone regularly.
However, in February 2008, I returned to ER with severe pain in my back that came around to the front. Many tests done on me! ER doc came back to report I had lesions on my liver, a large mass on one ovary, a bowel blockage in the area of the gallbladder, and the ugliest gallbladder packed in fluid with several stones that he'd ever seen! Via yet a 4th vertical incision, ovary and mass removed (no cancer), lesions on liver were nothing - described as blobs of blood vessels that I was probably born with (I have one in my spine as well), gallbladder removed, obstruction repaired.
After that surgery, I returned to a diligent use of Pentasa. I was never the same after that surgery though...cannot tolerate fatty foods and had such bad distention in my stomach area that I looked 4 months pregnant (I am 5'9, 128 pounds so the distention was very apparent on my thin frame).
Then this past June 2009, the distention and gas became so terrible, that I returned to my doctor. A regular CT scan showed large amounts of air in body cavities that shouldn't have air - this meant I had a small perforation somewhere in my intestines! I was put on Cipro and some other antibiotic to guard against infection, and was also put on a liquid diet for a week. During this same week, a CT enteroclysis was ordered...not a fun procedure but determined for my doctor as to whether I had strictures or inflammation causing some of my symptoms...thank goodness it turned out to be inflammation, because strictures would have meant surgery. The CT enteroclysis also revealed that the perforation had healed itself in just one week (amazing!). In a consultation with my doctor after these tests, he wanted me to take Prednisone - HOWEVER, I had done some online research about alternatives to Prednisone, and asked him about Entocort - he said sure and that is what I am taking currently.
Let me say that I have never felt so good as I do right now - I realize now that I was having all kinds of small flare-ups and such throughout the years. I swear by the Entocort and pray every day that it continues to work for me. Entocort, while still a steroid, is only aborbed by the intestine so I have no systemic reactions to it.....So that's my history and my current status.
Feeling good is the best thing! I'm sure you will also enjoy reading all the threads here, there is a welath of information about all aspects Crohn's.
